Yesterday morning I started to develop a rash. By the afternoon my body was covered in bright red spots. I ended up spending the night at A&E as my face and lips had become extremely swollen and the skin had become very leathery.
I have been taking hydroxychloroquine for 23 days and apart from issues with making me feel very strange in my head, I was okay and hoping that it would eventually help with my symptoms. The doctor I saw last night had never heard of lupus or hydroxy and told me to stop taking it. He also gave me prednisilone, however, my rheumatologist had prescribed this for me last year and it caused yellowing of my eyes, numbness etc, so I was told to contact my GP today for a replacement.
I am feeling confused as I am wondering if this is an allergic reaction to the hydroxy or if it could be photosensitivity instead. I never sunbathe as it always results in rashes on my hands and arms, but I was outside a little over the weekend.
If anyone has had any similar experiences, please would you be kind enough to share them with me?
Thank you for reading and have a lovely day!
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Jasmine22
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HI Jasmine, I had an allover pin-prick rash from hydroxy and swollen, peeling lips plus palpitations - it was an allergic reaction. The rash kept developing and my lips kept peeling for a week after stopping even though I'd only taken it for a fortnight tapering up to 400mg - it stays in your system for months. I tried lower doses twice but can't tolerate it.
Best to contact your rheumy to discuss - leave a message with his/her secretary.
Thank you both for your replies. I spoke with my GP this morning and he’s given me dexamethasone, so hopefully these will help and not cause a reaction as the prednisilone did. My rash is actually worsening and my face and lips more swollen than yesterday, but hopefully the steroids will help. I’ve also left messages for my consultant and rheumy nurse.
I’m so disappointed, as I was so hopeful that the hydrochloride would start to give me my old life back. The thought of taking methotrexate I find really daunting and I hate being back to square one, I guess we just have to try and remain optimistic and believe that it can only get better.
Thank you for your support, it means a lot that people care xx
I see you wrote this 4 yrs ago. How are you now? I was just diagnosed with Lupus, and same situation.. rash, lips burn etc .
Hoping for good news for you!
Lisa
Hi jasmine am so sorry to hear how unwell you have been and that a dr hasn’t even heard of lupus is shocking. You could be allergic to the medication as I too had almost identical symptoms. I went to see an alternative therapist as was very ill. He explained that I am hyper sensitive to almost everything and am highly allergic to so many things. In an effort to get well try eating as many natural foods as you can and try and cut out anything that’s not natural. I am starting to see a pattern and have a rough idea what’s causing most of my unusual symptoms. Try writing a daily diary of anything and what you eat and drink and also what medication you take and eventually you start to realise what could be causing it. Go see your dr tell him you want your medical records get everything and read though all your notes. I have had to do this after being so unwell. My son and I have learnt so much by doing this. The medication we take can make us so unwell and even if you are being told it’s negative for lupus I would want all your tests to be redone as I was told in the past no it’s not lupus and just last month was told yes it’s definitely lupus. I wish you the best of luck. Tell us how you get on. Have a great day and take care. Elena
Hi Elena, Thank you for your reply and I'm so sorry that you suffered similar to this as it's just such an awful experience. I'm pleased that you are starting to find out what makes your symptoms worse; I will definitely start making a diary in order to try and establish a pattern.
My rheumy nurse just called and has said that I need to get an appointment with my consultant asap. It's highly likely that he will want me to take methotrexate now and this fills me with dread. I'm on my third week off work and have another 2 weeks sick leave left. I'm concerned that I will have similar side effects as I'm suffering now, but i can't keep going along with no help for my conditions either. Catch 22!
I hope you are having a good day Elena. Take great care.
Hi jasmine I hope this next medication your going to try is free of side effects and it helps you. I think it’s just trial and error and it’s like being on a roller coaster of side effects and symptoms that we just want to be free of. Let us all know how you get on and I hope soon your feeling much better. I have a list of questions for my rheumatologist next month and am hoping I get somewhere. You and I and so many on this site can’t cope with all the symptoms and side effects and being given so little medical care. I think it’s just researching better options and keep trying to get some drs on our side. I am just about to request another rheumatologist that Paul very kindly recommended and hopefully that helps. I hope your employers are supportive of your health and your soon feeling much better. Am wishing you all the very best. Elena. 😀
I had a very bad rash reaction to an increase in my dose of omeprezole a few years ago. It took about ten days from the increase. It was head to foot, even on my ears. My local GP told me to immediately stop taking the omeprezole completely, which did indeed stop it in its tracks and I was transferred to Ranitidine instead (Zantac). The rash then took weeks to disappear completely which given that it was itchy was extremely uncomfortable. I was given steroid cream to apply (not good for you perhaps they can give an alternative if itchy) and took up to 3 lukewarm showers a day and wore loose, soft natural fibre clothing. Given that lupus sensitizes both the skin and the whole intestinal tract, allergic reactions are quite common so you are in no way alone. I used E45 shower cream. According to my research and personal experience, getting the right and most effective combination of medication is very often a process of trial and error and, indeed, of adjustment for those with autoimmune conditions. So sorry you are having to go through this on top of all your other symptoms - I really feel for you and send you my very best wishes that the rash and swelling goes down quickly. Lily
Hi Lily. Thank you so much for taking the time to reply. It’s 04:15 and I’ve only managed an hours sleep so far. The rash is actually getting worse at the moment and my face is very swollen and feels like it’s on fire. I’m using E45 cream and usually find that it helps, but not this time unfortunately. As you so rightly say, it’s all about trial and error with the medication and it is such a shock when you suddenly have your world turned upside down with these conditions. I try to stay positive, but it can be so difficult can’t it? We just have to plod on and hope that things improve with time.
Once again, thank you so much for your kind words; they really do mean a lot. Take great care.
Hi Jasmine, I hope you’re feeling a bit better now? I’m shocked an a&e doc had not heard of hydroxy or Lupus. I have RA and discoid Lupus. Also on hydroxychloroquine plus abatacept & azathioprine. I don’t have any real answers but I am having skin issues with hydroxy which I feel is linked to sun sensitivity. Monitoring it at the moment, being careful and using spf 50. I also had a few years on Mtx. Pls don’t be scared of it. We all react differently and I had no issues with it. Folic acid helps with side effects and if they try it, they should give you that too. The injections can also limit side effects and they aren’t as bad as they seem either. Hope you’re doing ok today x
Hi Rachel. Thank you for your kind words. Due to the severity of the reaction that I had I've been taken off hydroxychloroquine completely. I have been taking folic acid for many months due to very low vitamin D levels. I don't seem to react very well to so many drugs. Even the steroids that I'm currently taking a short course of are making me feel quite irritable and are not providing the lift that I have witnessed in others. I've just popped my head out of the door and the light is much too bright for me today and is making me feel very disorientated and sick.
Wait……… Any doctor that does not know about "Lupus & hydroxychloroquine" ....does not take you off of hydroxychloroquine!!!!
That is the most gentle Medicine we can take for Lupus, not to say that it's not causing you a problem, but steroids are so much worse on your body 😳 And you already had a problem with steroids 💜🤔
Immediately..... get in touch with "your rheumatologist", doctors only get "one hour of study" of lupus in their medical studies. They have no clue what to do unless they are "specialist like rheumatologist". And then some of them don't know what they're doing.
Your rash could be from something else that Lupus has been irritated by.....another irritant possibly like the sun, foods, stress, hair dyes, and the list goes on.
"Call your rheumatologist"- they are always our first line of defense unless it's an emergency and then we can go to the ER or "urgent care" for quick fixes, if needed or if we have to be hospitalized for a major reaction.
If you do not like your rheumatologist or if you do not get along, immediately find a new one.
You have to find one you can trust and who understands you and who will listen to "you" ....... all of us are different – living with Lupus.
Our bodies are attacked in so "many different ways", and it needs a rheumatologist that's "willing to go the extra mile" to help find what is best for us in medicine, treatment, "understanding", and Lowering our stress levels.
Thank you for that. I did speak with my rheumatology nurse the day after my reaction and she advised that it was not a good idea for me not to continue with the hydroxychloroquine. I took steroids until Sunday evening and then stopped them as advised by my GP and by Monday afternoon the rash was starting to appear again. This morning I am covered from top to toe. I've just spoken with my GP and he's putting me back on the steroids.
I'm trying to feel glad to be alive today, despite the severe fatigue after a decent night's sleep. The sun is shining, but I need to remind myself that it could be my enemy rather than my friend. Have a good day!
I would add a dermatologist to the list of the doctors that we see when we have "rashes".
Several of my Lupus friends have had "skin rashes" and with a prescribed "topical steroid cream" they were able to get rid of them.
It was just there Lupus flaring and that's how it came out was in rashes.
If that is not what's causing the rashes, you need to find out what is causing the rash.
My friends lupus skin rashes would be so "itchy they would scratch them and bleed" and sometimes they covered their whole bodies.
Yet I have a few friends who still get rashes, even though they wear sunscreen from head to toe underneath their clothes and the doctors are yet to figure out what is causing the little red bump rashes on their skin. We have to laugh at ourselves, because we are just a guessing game at times 😳🙃😐🙄 it's like what else can happen 😲 But we muddle through, we research, we work with their doctors, and usually we find something that can explain most of the symptoms.
But it may take going to other doctors the rheumatologist refers you to or possibly even switching rheumatologist, if you are not getting the help you need.
But to make you feel better the steroid cream was the answer for "them" and the dermatologist had to prescribe it. They will determine what actually is causing the rash.
Lastly, The rash could be something totally separate from your Lupus. One of our Lupus friends went to many doctors because they could not discover the source of the rash and they could not control it.
Finally she found a dermatologist that was recommended in a different state, and they discovered that it was something called "sweet syndrome". It was very rare, and that's why it was not being diagnosed.
So we never know, and we have to keep pushing to find the answers. I'm going to put the link to what her diagnosis was about below just so you can see that it can vary so much from Lupus or it can be part of our Lupus.
And that is our quest, to figure out the difference.
We get really well educated living with Lupus – it can be a frustrating journey, challenging at times, but learning to be kind to ourselves and really "listening to our bodies" & to do what it says we need to do - that is the greatest gift to ourselves.
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